day 86 August 30, 2009

Sunday-another lazy day but once the weather broke we decided to get out. We took a ride and went to try mini golf over in Deer Park. It was a nice place with stairs and hills but Cody did the whole course well. It would have been nice to go out to lunch but since he can't eat out we went to the grocery store. Cody picked out a ton of snacks. Not a good place to take him, he sorta went a little nuts with the junk food!! It is all good. We hung out this afternoon and then watched "Marley and Me." I cried my eyes out. Early night but a good day.

day 85 August 29 2009

Saturday-Today it was rainy and cloudy all day. We were kinda bored so we took a ride to West Neck beach. Cody drove the car in the parking lot. He cannot drive now due to the seizures and the anti seizure medicine so he just wanted to get a feel of it. On our way home, we got a call and one of Cody's friends and his dad came over for a visit. It was so good for Cody. He got tired and needed a nap then we watched a movie. It was a lazy day. All was good for a day with crappy weather.

day 84 August 28 2009

Friday- Clinic day. We went in the our appt and Cody still has diarrhea so trying to get to the bottom of this. He also is suffering from some kind of congestion so they cultured his throat. It is 9 pm and no call yet, so maybe all is negative. It is possible that Cody can develop allergies from the cord blood, weird I know. It is also possible that he can be getting the diarrhea from the medication.

Today we both napped, it was that kind of day. Cody thanked me today for taking care of him through all this. Well, that was all I needed to hear. Amazing.

He did eat better today so that makes me feel good.

Have a great weekend everyone.

day 83 August 27, 2009

Thursday-Today we woke up and waited for our phone call from Casey. I had a rough night but will get through this too. I know we will be busy so hopefully time goes by fast for us and for Casey.

We got the call and said our goodbye's and now Cody is playing XBox Live with him. I just heard him give him some advice. He told his brother not to eat yellow snow and not to eat gum stuck on railings. Now that's love!!!

It was a quiet day for us.

Day 82 August 26 2009

Wednesday-Well, today was an emotional one. I went back to school and to my classroom for the first time since December. I met the teacher that is replacing me and looked around my room. I am so lucky they are holding it for me. I will miss not going back but I know I will be busy here with Cody and making sure he is better.

He is doing well. The drs called to say he cleared the virus so that is good and his last EEG was normal. Once again, good news. He is still not eating as well as he was and has diarrhea so will follow up with that tomorrow. He played bocci ball on the neighbor's new court yesterday. He did pretty well.

We got the call from Casey and will say goodbye to him tomorrow. So upsetting. Continue to keep him close at heart.

Day 81 August 25, 2009

Tuesday-We had a good visit at Sloan today.We were there for a little while because Cody got the antibiotic he gets every 2 weeks for a certain type of pnuemonia. His sodium is a little low so we are working on that. He lost some weight so we are continuing with the IV nutrition that he gets overnight. Our regular doctor is away until Tuesday so we will talk more with her. We head back on Friday. I am still a little concerned with Cody being so tired but all seems 'normal'.

Today is the 4th year anniversary for the passing of our little angel Tyler. My thoughts are with him and his family on this day. We miss you Tyler.

day 80, August 24, 2009

Monday-Today you started physical therapy with Darren. You did really well and were worn out. You asked your car guy to come help you with your car and you could barely stay up! I am thinking you may need blood. We will know tomorrow.

It is going to be an emotional week for me, I know. Casey goes this week. Please continue to keep him in your prayers too. Thank you...

Day 79 August 23, 2009

Sunday-I guess I feel a little worried today. You seemed more tired than normal. We went to Target and just walked in to get one thing and you were tired and took a nap. I would not be surprised if you need a transfusion soon. Maybe Tuesday when we go. We relaxed the rest of the day. Tonight when you took a bath, we had to use shampoo!! It was pretty exciting. We both laughed. Hey, it is the little things....

day 78 August 22, 2009

Saturday-Today I got back to the gym. I went once this week and then again today. Sure feels good to be back but so hard to get in the groove. Trying to get Cody used to a little time alone here and there. He is still anxious when I am gone but he does well. Just takes time.

Cody's Uncle Jim visited today with his two teenagers. We decided to try Dave and Buster's. Cody did well and it was not crowded, thank goodness. He was pooped though, going to bed at 7 and would have gone earlier if I had let him. It is 9:30 and he is still tired now. But he did well, just wore himself out. The sad part was that he did not really remember ever going there. He said it felt somewhat familiar. Then we went to Victor's and they will make us a pizza without cutting it and they cook it really well for us. Cody tried to eat a little but was not into it. But it was a nice visit and we just chilled the rest of the day.

day 77 August 21, 2009

Friday- We got up and made it into the city without a lot of traffic. We got a good report. Cody's counts are holding. His white blood count is 7.7 with the normal range between 4-11. His hemoglobin is a little low but holding steady. It is at 10.7 and the normal range is 13-17. They transfuse at 8 I think. His platelets are 6700 with the normal range 160,000-400,000. They are the last to come in but he is holding them which is a good sign. His ANC, absolute neutrophil count is 6.1 with normal being between 1.5-8.8. By normal range, I mean for the average adult not someone with a BMT but he is in that range.

We left the clinic and were home by 12. I should only hope all visits are like that.

Day 76 August 20, 2009

Thursday-Well, today Cody woke up asking what are we doing today? We decided on a movie and saw "Funny People" with Adam Sandler. Well, Adam Sandler's character as AML, the other leukemia. The movie was really long and I did not think it was that good. It was tiring for Cody to sit that long. I knew when he said "wow, this is long" and then put his head on my shoulder that he was tired. I think the heat affects us. We did not have June and July so August hit us hard and makes us very tired. Bed time was early and we are off the Sloan tomorrow and are hoping for a short visit.

day 75 August 19, 2009

Today was a good day. We stayed home till around noon and finally took a drive for some ices. Not sure if he was allowed to have them but we did it. He had a lemon one. Still not feeling so great but we went to physical therapy for an evaluation. He did well with that and we will work on strengthening his whole body. He wants to be ready to play soccer again.

Day 74vAugust 18, 2009

Tuesday-We wake up VERY early and head into our clinic visit. We have another EEG scheduled for 9:30 but we want to get the blood and cultures started before that. Not sure what the EEG showed but they tried to provoke a seizure so we shall see. The stool cultures came back positive for 2 viruses. Not such a big deal for me and you but he needs more medication. Should be ok once we get back on track. Long day and we both came home and crashed for an hour.

Also got an invoice and this process is up over a million dollars. Cody is a million dollar kid!! Unbelievable.

Day 73 August 17 2009

Monday-It sure is nice to be home. We do a lot of nothing but then again we are so busy, if that makes sense. Cody had a drum lesson today. He did pretty well. He forgot a few things but once you find it in his brain and fish it out, he remembers it. He said he felt it went pretty well.

He is dealing with some diarrhea so I was on the phone 3 times today talking to the nurse practitioners and then the doctor. No need to rush in as we go in tomorrow morning.

We are tired and get to bed early.

day 72 August 16, 2009

Sunday-we woke up early today and even though it was hot, Cody wanted to go see some friends at school playing soccer. His coach was going to be there too. So we went to HSE and sat under a tree and watched his friends play soccer. They all came up to him and took a break. It was so cute. I walked away at one point to just let them hang for a few. We stayed for about an hour and then came home. It was really hot out even at 10:00 a.m. We hung around and maybe it was just too hot to eat because today Cody only ate a few bites of egg. I am keeping a close eye on that. Cody's friend from the neighborhood, Ben came over. We ran a few errands and Lauren came back to trade her guitar for a drum pad. They kinda switched instruments. She is a sweet girl and glad she comes over to keep us company. We ended our day with a walk on the block. Cody was pretty tired so he went to be early. Nice lazy summer day.

Day 71 August 15, 2009

Saturday-well last night was weird. Cody woke up with diarrhea and vomited. We have not had that since we left Sloan. I think we have to be more diligent with the anti nausea meds. I thought we were over it. So we doubled up and went back to sleep. Cody was kinda cautious eating today but overall felt good. Today Lauren Johnson came over to visit us. She is Nicole's friend and a very funny girl. We hung with her then took a ride to watch her play tennis. She is pretty good! We relaxed at home. Cody seems a little tired but he did say it is hard to do all the visiting.

Hopefully the night will be better.

day 70 August 14, 2009

Friday- Nice day at home. Cody is on the scrambled eggs kick now. But he has them with tabasco sauce. He loves it. We had a steak delivery yesterday from the Notarantonio's and we had those for dinner tonight. Love those Notarantonio's.

Today Cody's friends, Derek Sekular and Harrison Marx came over. His friend Tom Morello came too. Cody was nervous about the visit but he did well. It was especially sensitive with the whole sudden passing of Harrison's dad. But they came to see Cody.

We relaxed in the evening and went to be early. It was a great day.

day 69 August 13, 2009

Thursday-We headed into our appt and we got there early.

Cody's counts were good. We were told that he might be able to return to school in January. That works since I plan to go back in February. He is nervous but it will be good when the time comes. We got the MRI results and the infection/swelling is almost back to normal. Much better! The neurologist talked to Cody and he has not been telling me that he is still having kinda mini episodes. The neurologist stimulated him so that he would have a seizure and he did. So they ordered and EEG right away and of course that was normal. We increased his seizure meds and will do another EEG on Tuesday. It was a very long day but we were pretty much happy with the results so far.

On the way home, I asked Cody if he feels different. He told me that he feels happy and stronger than everyone. He said too that he feels so mature. He has been through so much the past 8 months and he is more mature than a lot of kids his age. It happens. He is a different person and so am I, because of this. I think we are better because of it too.

Day 68 August 12, 2009

Wednesday- Today we stayed home. Cody's dad came to visit and he had a long day. Cody went to bed early but had a good day. Tomorrow is another clinic visit and we get the results from the MRI. I am nervous but am sure all is good.

day 67 August 11, 2009

Tuesday-Today we relaxed and did a few things here. Cody is doing really well with everything. He is eating and drinking and just happy to be here. So am I! We are getting used to a routine here but sometimes it is hard. We have not had that many visitors as we are waiting to catch up a little. Life is good.

Day 66 August 10, 2009

Monday- we are up early and headed to Sloan. We get there and go to a waiting room for other transplant patients. It is good to hear stories and to see how others do it. We get some valium and head down for the MRI. Cody was very nervous. He did great! We went back up for a clinic visit. All went well!! Counts are good. We were on our way home in no time.

Day 65 August 9, 2009

Sunday- We are enjoying our time home, for sure!! Cody is a new person. He has had a few visitors and it was perfect. I enjoy seeing my friends and neighbors too.

Dogs are doing well. We are heading in tomorrow morning for a clinic visit and a follow up MRI. Life is good!

Day 64 August 8, 2009

Saturday- We were up early and ready to go. When Cody was sitting in the bed, rather quiet and I asked what is wrong he replied "what could ever be wrong mom?" Sue and Emily came at 10 to get us! We were sitting downstairs waiting. We packed the car to the roof. I was actually not sure it was all going to fit but it did. We had a lot of medical supplies. We got home and chilled and unpacked a little. Emily made us a welcome banner for the fireplace. So sweet! Not sure why I had the cleaning people here. Cody ate quite a bit and we could not wait to get the dogs home. We got Jazzy and she was a little quiet but seemed ok later. Moira brought Xena a little later and she was so cute sitting at the door waiting for Cody. It was very emotional. Xena and Cody have a connection. She just sits so calm when he is near her. I know he is happy. We had Cody's friend Tom here and a guy from the racetrack stopped over. It was a long day and an emotional one. I think my tears started when we hit the bridge. Great to be home!!

Day 63 August 7, 2009

Friday-We got the news today that all is good and we are free to go to HOME! The dogs are waiting! We had a great doctor visit and will return Monday for a follow up MRI. Cody did his OT and PT and is exhausted tonight. We are very excited to go home. Wish us luck!!

Day 62 August 6, 2009

Thursday- Well, today we woke up at 9:15, which is late for us. We were bored so we decided to go to a movie if the theater was not crowded. So we got in a cab and went to see "Hangover". Very funny movie. Cody ordered lots of junk food and basically that was our lunch. We got back to the room and were pooped. We relaxed and then took a walk to the park later. We are preparing in hopes that we get to go home this weekend. If it is tomorrow, which will be late afternoon becuase of physical therapy, we will just have Sue come on Saturday morning. Not sure if we will be able to sleep but we will try.

One thing I ask, is to please include Casey in your thoughts and prayers. He will be deployed at the end of the month. It breaks my heart but I know he is strong and smart and he will be fine. We cannot wait for his return to us here on Long Island for Christmas.

Day 61 August 5, 2009

Wednesday- Well, after emailing the doctor back and forth, she said we could go to the Museum of Natural History. So we grabbed a very heavy wheelchair and a cab and headed across town to the museum. We avoided the crowded areas and Cody really enjoyed it. He walked a little and rode a little. We walked along Central Park West and headed back to the room. We were really tired. We hung out in the room and then took a walk later in the day and then in the evening. We walked up to Sloan. Cody wanted to say goodbye to his night nurse, Erin. He was always asleep when she did her rounds and then so groggy in the morning when she left us at 7:30 a.m. I think if Cody was near her age he would have proposed. She is a tall, dark haired, green eyed Irish girl. So sweet too. We will have to go see her from time to time. I will have to get a picture of her for him. I know we will be back there at some point so we will see her then.

We both crashed early and are resting and cleaning tomorrow so that we are ready to go when the drs give us the green flag. On Friday he has physical therapy and occupational therapy until around 5 so IF we get discharged, we will have our neighbor Sue come for us early Saturday morning. Who wants to sit in Friday night summer traffic??? Cody already told me he won't be able to sleep that night. We'll deal with that.

Day 60 August 4, 2009

Tuesday-Cody was up at around 4 am. Later he told me he was anxious about the appt at Sloan this morning. He tried to sleep but just could not. At one point, he asked me to lie with him in the twin bed. We cuddled which was really nice. He is so sweet. We got to our appointment and he was great and so was the visit! All of his counts were satisfactory and after we saw our doctor we waited to see one of our nurses, Julie. He was happy to see her on the outside. Dr. Kernan initially said we could go home next Tuesday but after telling her about how hard it is to eat and cook here, she thinks that maybe on Friday/Saturday. We saw a picture of Jazzy all groomed and it makes us more excited to get home. After the appt, we were told we could go to the cafeteria and Cody got some bacon. As we were sitting in the Sloan cafeteria, he said "I feel like I am on top of the world!" We went downtown a little, by cab and went to the Container Store to get a pill box that the drs recommended to get. It will keep us organized. We did a little shopping and then came back to the room to chill. We took a walk again around 4 to the park nearby and got ice cream. I made the mistake of letting Cody go into Duane Reade, the drug store and he loaded up on snacks. We will need an extra suitcase to get home.

He is a different person. I can't wait to get him home for everyone to see this. He is truly amazing and a trooper. Life is good!

Before I end this, I went downstairs to get something to eat. I saw the girls all standing in a circle. I thought they were going to dance or something. Then I thought someone looked famous and I realized it was Paula Abdul. I ran back upstairs to get Cody. He was thrilled to see her and we took a few photos. Great way to end a great day! Fun!

Day 59 August 3, 2009

Monday- We got a great night of sleep, now that we figured out the thermostat and are not freezing. Guess we are catching up too. We woke up at 7:30 and Cody wanted scrambled eggs and bacon. Well, we cannot make it here so we did the best we could. I bought the pre cooked bacon and we made toast. I will cook once we get home. We had breakfast and took a walk to the park near the hospital. It is a kids' park but it was shady and we just sat for a while. We got back for lunch and then we rested and went back out in the afternoon. We met Kate Schmitt for a walk too. Stopped off at an outdoor place and got chips and a drink. He was so glad for that. We are getting used to the cleaning and mask thing and will ask tomorrow what we can and cannot do. Each day makes us more anxious to get home.

We had a pretty good evening. We had a little trouble with the IV last night and it scared both of us. When I hooked up the TPN which is the IV nutrition, we got blood in the line. It scared us both pretty good. I called the nurse and he talked me through it. Phew!

Cody has been feasting on his uncle Jim's burgers. He makes them and walks here and delivers them. Someone is getting spoiled. No, just hard to make a meal here.

Day 58 August 2, 2009

Sunday-we woke up early and it was pouring out. We walked to the corner and got a cab and headed to Sloan. We had to go to Urgent Care for a cbc-complete blood count. Everything was satisfactory and we were back in our room by 11:00. Platelets are the last to come in and they are low so I am assuming we will be getting some on Tuesday.

We hung around all day and then when the weather cleared, we took a nice walk. Cody invited his uncle to come. It was a good walk. We got back to the room and I had to get the IV meds in order. I started getting things ready and decided I could do it on my own so I canceled the nurse. As I was hooking Cody up, he says "we got this, mom". So true!!! We did all three meds without any issues.

His appetite was great today and just hoping he does not get bored with the food choices for the rest of the week.

Day 57 August 1, 2009

Saturday-Hello from the Ronald McDonald House here on East 73rd. "Where Hope Has A Home."

We had a GREAT day. Cody slept through the night and I was able to do all his IV infusions and disconnect them. I had a hard time sleeping-I think I kept listening for him.

Cody ate well today and we decided to take a walk around 1:00. We borrowed a wheelchair since Cody's foot still hurts and it is kinda hard to walk for a long distance. He was so happy to be out. He keeps saying "this is amazing!" And it is! I know he feels good. We met up with his Uncle Jim and his significant other and then toddler and strolled along 2nd Ave. We stopped in an EMPTY shoe store and got Cody a new pair of supportive sneakers. We will be commuting and he needs to have something for his feet that are comfortable and supportive. I think we were in and out of the store in 4 minutes. He was so good about wearing his mask and just enjoyed being out. We came back to the room and both relaxed and watched a few movies while we waited for the nurse to get here. Cody put in a request from Uncle Jim and got a hamburger, well done, with pickles. He enjoyed that. We got the nurse stuff taken care of and I finished up the IV's and we were in bed at 10:00. A great first day! We will get up early to be at Sloan for a 9:00 appt for blood check. Enjoy your Sunday even though it does not look so nice out.